[Gunnhild]

Hi 🙂 I thought I would get notification on all post in this tread so I though there were nothing new here… until I just checked. Oh, well.. not so experienced with forums I guess 😛

Michelle, very exciting to hear if you have any side effects at this point? I only have some chills in the evenings.

Update on the treadmill walking. Yesterday I did 5 minutes! Two times! Very exciting. Seems like the biggest changes have come the day after I take both Etravirine and Imukin. Too early to tell if there is something to it. I write a Etravirine diary so we’ll see after some weeks if there is a pattern.
I also feel like speaking is going easier, and it is easier to walk the stairs. However how “I feel” is not very significant so it could be placebo of course. Thats it from me. Anyone else started?

[Gunnhild]

Update for you guys.
Until today I haven’t really felt any difference.I got a treadmill two weeks ago and I have walked 2-3 times every day. I have only lasted 2 minutes then the muscle in my legs would get stiff. On the clock after about two minutes. Like back in the days how the muscle felt after a really hard workout. So today all of a sudden I lasted for 3 minutes! And the legs felt much easier to move. Also I feel like I am automatically shifting weight from side to side and also have a slight counter-rotation in my upper body.These things I have been trying to make happen manually before, if you understand, since it has not been automatic. Also I am able to set down the heel of the foot first. I did 3 times 3 minutes throughout the day just to make sure 🙂

In theory I could be increased frataxin -> better iron “clean up” -> more ATP (energy) for the muscle.

Dare I hope for that? Is this the beginning of more improvements to come OR is it the almighty placebo playing his tricks?

[Gunnhild]

I have just taken tablet nr 5 so it had been 2,5 days since I started. I can not say that I feel any changes at this point. I also took my Imukin injection four hours ago. So far it looks like its not a problem to do both. That is a relief. I dont know when to expect to feel changes yet. The two others are early onset. Perhaps they feel quicker effects since the frataxin levels are lower to begin with. One of them actually sat steadily without support of the arms yesterday. Her mother said its five years since she could do that…

[Gunnhild]

About one week. Hearing improvement is on the list too now👌🏼☺️

[Gunnhild]

Everybody must update us here:)

Make sure you know the possible side effects. Every new drug comes with its risks.

[Gunnhild]

Hi guys!! I know you are excited to hear any news. I took one tablet yesterday. No side effects. Maybe som chills, but only maybe. Got up early this morning to eat breakfast early so I could take a new tablet early 😛 Must be taken with meals. Still no side effects so that is a relief. I was worried about nausea. Just hate that! So I’ve only taken two tablets so far. I think it is easier to get from sitting to standing, and I had to increase the speed on my treadmill. But everything I feel at this point is probably placebo. The improvements the two others have are things that I already have/can do. I also take Imukin and Thiamine injections + idebenone. If I get more energy I will have ADHD 😛 So of course I worry that I wont feel that much different, but I hope I will!! I am late onset also for the record. Diagnosed at 31. Now I’m 40.

[Gunnhild]

I can film my toes😆

[Gunnhild]

And also I must mention that the price is 1/3 here compared to the US🙈

[Gunnhild]

Glad she is ok! Must have been so scary.
Don’t worry about preaching. Its just fine.When I truly believe in something I tend to “preach” about it too 🙂

[Gunnhild]

Good point! Don’t just start takin a medicine just because someone else does and assume it is safe for you. Always to your own research and discuss it with your doctors.

Yes, I plan to measure what I can. Tomorrow I will film myself walking on the treadmill and film myself talking. Write something on a paper. Other suggestions?
I got the prescription today and I wont wait to order a peg-test thingy. My arms are not so affected, but maybe we can film and time my knitting speed instead? 🙂

[Gunnhild]

Whatever gives you inner strength and peace of mind… believing in god or not believing, as long as it empowers you I think it’s perfect! 🙂

[Gunnhild]

Me too😭😍 Scared to believe it.
The norwegian drug has dosage recommendations down to 6 year olds.

There are a few side effects so everybody should really look into it before deciding to try.

The two people taking it now dont have side effects at this point. So fingers crossed!🤞🏼

[Gunnhild]

Yes they both did! We almost dont dare believing it! Energy, improved speech, toe wiggeling, normal temperature and colour in feet and hands, stronger, improved balance… I’m very excited to try for myself. I hope I dont have any side effects that stop me from taking it and fingers crossed for some effects🤞🏼

[Gunnhild]

The drug is called Intelence in europe. The recommended dosage is 200 mg two times per day with meals.
They started last wednesday and friday.

[Gunnhild]

I plan to start this week if my doctor agrees. Two people that I know already started last week!

[Gunnhild]

Thank you for mentioning me although I dont see myself as a writer really. I just read your last article. Now that is writing! 🙂

I started my blog having a wish to share some practical tips about managing FA. My education is physiotherapist so I thought it could benefit others.

In 2012-2013 my depression, fatigue and anxiety increased very fast. Never had any of this problems before. Blogging got more rare. It was hard to find motivation to do anything at all. Then I started interferon gamma in august 2013 which eventually eliminated these three symptoms.I feel very æucky that I got these benefits. The effects of this drug seems to very different for every person that tries. So this kind of rebooted my life. I got very enthusiastic about sharing that story with “the world”. I got a lot of interest around that. The next few years I started workin like crazy. Renewed energy and all, so the blogging more or less stopped. Interferon Gamma failed the in the American study, unfortunately. It might still have a chance? But now I feel a little bit like “a cheater on FA”. It is hard to keep sharing my story when I know that most people in the world dont have the opportunity to try interferon gamma at this moment.

If I had time to renew my blog I think I would focus on the “normal”. How I live a “normal” life even if I have a disability. To motivate people to study, work, find love and so on.

Here is a link;
http://extremeliving.no

[Gunnhild]

I feel that the scientists are happy to explain when I email them. There is often an email attached in the author list below the heading 🙂

[Gunnhild]

Yeah, deep topic! Being diagnosed was an eye opener for me. I stopped believing in god after 31 years… I never felt bitter for being diagnosed, but it kind of opened my eyes to other peoples suffering. Specially hard to see kids hurting. And I started asking myself over and over; where is god?? So eventually I decided to myself that IF there is a god I’m not a fan. Somebody allmighty should do better. So I stopped believing and discovered true inner power instead. It was such a relief actually. Its good to be able to empower myself instead of praying for someone out there to help. There… I might have offended millions of people by saying this… sorry!🙈 Its just my personal meaning.

[Gunnhild]

I will let you know!

[Gunnhild]

So it helps spasticity Jake?

Very curious about this. Does cannabos oil have the drug effect? Or is it just hemp oil?

[Gunnhild]

I dont know yet. When I have talked about etravirine in other groups som people get very upset, kind of. Especially parents of people with FA. I wonder if it puts too much pressure on some people.

With Imukin I waited for a couple of months before saying anything on the blog. Wanted to make sure It had an effect and too see how the side effects were.

I’m just not sure what to do yet 🙂

[Gunnhild]

400 total. 200 mg twice a day with meals 🙂

[Gunnhild]

They are both early onset in early twenties. The doctors prescribing the drug is primary physicians. I will keep taking blood tests to monitor kidney, liver and general blood status, but I already do that because of Imukin. It is also important to read the packaging information so you are aware of any changes that needs to be reported to the doctor. The patient needs to know what to look for.

[Gunnhild]

Yes I do!! But I forgot about it. I will measure tomorrow! Brilliant idea 😀